MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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flvermonter's picture
Replies 6
Last reply 6/20/2013 - 4:37pm

We meet with Dr Zager on Monday, but I saw the test results on the Moffitt web site.  I need help understanding and in hopes you can help explain to me.

This is from the last surgery to remove the rest of the lymph nodes on my husband's right side.  I think this is good news, but do not know.

It reads tha the BRAF result is "Not Detected"

The BRAF Interpretation - No point mutation is identified in BRAF gene, codon 600.  This assay uses pyrosequencing technology, targeting BRAF utations on codon  yoo.  A negative result indicates that no mutation is identified in these targeted areas with a sensitivity of 5%.  The test covers  over 95% of known BRAF mutations with a specificity of 100% during validation against the V600E results.

 

Thanks, Mary

 

Hugs to all, patients and care givers.

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jP85's picture
Replies 5
Last reply 6/27/2013 - 10:04am

I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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Who_am_i's picture
Replies 3
Last reply 6/19/2013 - 10:09pm
Replies by: Janner, Who_am_i, SABKLYN

Tomorrow is my WLE and SNB, about how long will it take for the results?
Thanks,
Patti

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AstraZeneca's experimental drug, selumetinib, is the first targeted medication to show a significant clinical benefit for patients with melanoma of the eye (metastatic uveal melanoma), researchers from the Memorial Sloan-Kettering Cancer Center explained at the 49th annual meeting of the American Society of Clinical Oncology (ASCO), in Chicago, Illinois.

The scientists say that their findings will probably change clinical practice for patients with metastatic uveal melanoma, which to date has been an "untreatable disease". Uveal melanoma is a rare disease, there are 2,500 diagnoses annually in the USA, half of whom develop metastatic disease. For decades, survival of patients with metastasis has remained obstinately at 9 to 12 months.

I'm me, not a statistic. Praying to not be one for years yet.

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bikerwifee's picture
Replies 9
Last reply 6/27/2013 - 10:07am

Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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Owl's picture
Replies 4
Last reply 6/28/2013 - 6:42am

Hello everybody,

just wanted to share some good news with you. My husband has its 6 months on Zelboraf tomorrow and scans from last week show that it is still working. Tumors are smaller or gone. We are so thankful, it is very precious and we hope that it will continue. He feels very good most of the time, side effects come and go, but are manageable.

All the best,

Jenny

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Sasha's picture
Replies 1
Last reply 6/18/2013 - 10:18am
Replies by: hbecker

Hi All,

 

I haven't been to this Board in years!  I'm 39 years old and have a history of two melanoma insitus and one melanoma Stage 1a.  I have been cancer free for about ten years now.  I had a new place on my back just below my neck and wasn't sure what it was.  It was a colorless bump about the size of a pencil eraser on my skin that just recently started bleeding a little and became very tender!  I saw my doctor last Wednesday and she told me at the time she thought it was another melanoma.  She examined me and I had a couple of swollen lymph nodes in my neck.  She asked if I had been sick recently and I told her but I have been running a fever of around 101.5.

Anyway....the biopsy came back as "Invasive, well-differentiated, squamous cell carcinoma; with features of Keratoacanthoma."  I'm thinking that is good, right?  I'm suppost to go back on Thursday to have a WLE.  She said that further test weren't needed becuase this cancer is not likely to spreadsheet.  Does anyone have expenience with this type of cancer?  Am I doing my due dilligence by just having a wide lesion excision?     I'm

I appreciate any input you may have.  Thanks!

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out4air's picture
Replies 7
Last reply 6/19/2013 - 7:49am

My husband is Stage IIIb Metastatic (several unresectable melanomas on head) and has been taking Zelboraf 6 per day along with 10 mg of Prednisone for 25 days and has all the below symptoms:

All symptoms:
Excessive Sinus drainage and very watery eyes
Tongue and inside of mouth is coated white
Water and liquids taste terrible - very bad taste in mouth
Blurry vision, hard to focus more so when reading things close up
Redness in face and feeling of Tightness of face -just noticed skin was slightly flaking
Rash everywhere (shoulders to ankles) - doesn't hurt but if chilled it is a very weird feeling. The two spots on outside of calves do hurt but are red and you feel a lump
No stamina - tired frequently
Not sleeping well
Flat like warts on head and side of shoulder - Dr. removed them on Friday 6/14
Headaches
Everyday seem to feel worse

Also from From 3/26 modified neck dissection his neck muscle is still quite painful and very tight even after two months of physical therapy - would muscle relaxer help? Or has anyone tried acupuncture therapy for pain relief in neck muscle after this surgery?

Some studies have shown that combining a BRAF inhibitor like Zelboraf with a MEK inhibitor reduces a number of side effects, including rash. A MEK inhibitor was approved by the FDA a few days ago, under the trade name Mekinist. Has anyone tried the combination of these drugs?

We are in it to win it!

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Last year I finally got around to going to see a dermatologist.  I had an appointment in 2011 but during the time between when the appointment was scheduled and the actual appointment - 4 months - my father got very ill and I just forgot to go.  So, since the spot on my leg looked just as bad as it had the previous year, maybe a bit worse, I finally made the appointment and went.  The dermatoligist said he didn't know what the spot was, but he wasn't concerned about it.  There was however a spot on my left cheek that he wanted to biopsy.  Turned out to be a desmoplastic melanoma - and I had had that spot for a number of years as well,  my primary care doctor had told me it was a cyst several years previous.  Well, I had surgery and a sentinal node biopsy and got on with my life.  Still didn't like the way the spot on the back of my leg looked and said so at every doctor's appointment.  Two weeks ago I saw a physican's assistant at my plastic surgeon's office and mentioned it again.  She said she would do a biopsy just to put my mind at ease, but didn't think it was anything serious - have heard this for several years now.  Well, then I get the phone call that it is infact another melanoma.  How in the world could all of these doctors have not diagnosed that when I kept pointing it out to them???  Now I am a bit concerned because I know it has been there at least 2 - 3 years and has gotten larger in that time.  Also how much confidence should I have in medical professionals who keep looking at this and saying they aren't concerned with it when they are supposed to be able to diagnose melanomas?  

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Kate M's picture
Replies 2
Last reply 6/18/2013 - 2:07am
Replies by: JerryfromFauq, hbecker

Just wanted to tell everyone Thank You!
My mom is stage iv and I'm trying the best I can to help her throught this nightmare.
The information here is helpful and so appreciated .

Kate

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sjl's picture
Replies 14
Last reply 6/23/2013 - 3:08pm

Thanks to all who have helped me over the past 13 months with my husband's melanoma.  It is with deep sorrow that I report that he passed away last Friday.  He fought a very brave fight, never compained, never gave up and had hope until the end.  His was a particularly aggressive form and there was no stopping the beast.  but through this board I became educated, learned about the different types of treatments and variations of melanoma and was able to discuss his situation with all of his medical team.  I was always amazed at the help and support I got here and by the courage of those of you who are fighting this thing.  My heart aches but I am wishing all of you the best.  With the new treatments coming out and the ongoing research it is my sincere hoope that this beast will be beaten down.

Susan, wife of Jim

 

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ad2424's picture
Replies 6
Last reply 6/13/2013 - 4:41pm
Replies by: joy_, JerryfromFauq, ad2424, Anonymous

According to this study (http://www.ncbi.nlm.nih.gov/pubmed/23666915) 10mg has higher survival rates than 3mg. Does anyone know if studies are ongoing regarding best dosage?

Does the FDA ever change a dosage once approved?

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